New Jersey's high autism rate needs more attention

Alexandra Pais / For The Star-LedgerMatthew Samson, 2, who was diagnosed with autism at 18 months, plays in his backyard at home in Westfield.

By Amy Mansue

When the Centers for Disease Control and Prevention released its findings indicating epidemic proportions of children are affected with some sort of autism spectrum disorder, why was there not public outrage? Why is this only a one-day story and then we move on to the next headline?

Children’s Specialized Hospital has been treating kids for more than 120 years. We were here when the polio epidemic attacked our children. Autism may not be fatal and, in most cases, the initial signs are subtle — but that does not make it any less important to provide a diagnosis and treatment.

And when all the experts tell us that diagnosis by 18 months of age makes a huge difference in the quality of life for a child with autism, why are we not seeing people rushing to get their children screened? Why are we seeing children — 5, 6 and 7 years old — going undiagnosed?

The American Academy of Pediatrics now recommends that all children be screened at 18 months of age. I know pediatricians are skeptical about possible overdiagnosis, but if diagnosing a child at 3 years old versus 8 years old can mean the difference in that child’s ability to speak and participate as fully as possible in school and life, then why wouldn’t you use the screening tool and just be sure?

All our focus needs to be on early identification and, as the state’s largest provider of autism services, we are leading the fight, training new specialists and teaching pediatricians, nurses and care providers about the importance of spotting the early signs of autism.

These new CDC findings may be jaw-dropping, but not to the clinicians who work at Children’s Specialized Hospital. Our experts have seen rates rise over the past 10 years and we continue to try to meet the soaring demand for our services. The hospital treats more than 3,500 children for services related to autism each year.

We have grown from two developmental behavioral pediatricians to 10 pediatric developmental behavioral specialists today, but we still have a six-month wait for services. Parents ask why there aren’t more physicians to make this diagnosis. In pediatrics, unlike adult care, there is a scarcity of specialists to treat children. Nowhere is it more apparent than in the field of development pediatrics.

The specialty training is significant — 10 years of training before they can sit for their boards. In New Jersey, there are 31 licensed developmental pediatricians for New Jersey’s 2 million children. Working with Robert Wood Johnson Medical School, Children’s Specialized Hospital has the only fellowship training program for this specialty in New Jersey. These specialists are not the only clinicians who can make this diagnosis, but they are certainly an important part of the equation.

Children’s Specialized Hospital has continuously received support from the New Jersey Governor’s Council for Medical Research and Treatment of Autism; to date, we have received $1.5 million for clinical enhancements and $460,000 for clinical research.

With this funding, we have created a developmental evaluation screening service using specially trained advance nurse practitioners and have established screenings in several underserved communities.

Our experts have trained more than 250 community pediatricians and 1,500 early childhood educators to recognize the red flags, how to discuss concerns with parents and guide them on where to go for more help. Pediatricians, nurse practitioners, teachers and parents must educate themselves to look for the signs and symptoms of any potential red flags.

The American Academy of Pediatrics and Autism Speaks have been working feverishly to educate and increase awareness. They encourage the use of the M-CHAT checklist, which allows pediatricians and parents to identify potential signs and red flags. The link is autismspeaks.org/what-autism/diagnosis/m-chat.

Autism isn’t life-threatening, but it can certainly be life-changing for the entire family.

At Children’s Specialized, we commend Autism Speaks, Autism New Jersey, the CDC and others who are committed to increasing access to services and awareness of these children’s needs. We call on everyone to support and embrace people with autism and all people with special needs.

Amy Mansue is president and chief executive officer of Children’s Specialized Hospital in Mountainside and treasurer for the Children’s Hospital Association.